Information for employers

Cystic fibrosis (CF) is a life-limiting, inherited condition caused by a fault in a gene. You can’t catch CF or develop it later in life. One in 25 people carry one copy of the faulty gene that causes CF – you need two copies to have CF.

In CF, the movement of salt and water in some of the body’s cells is disrupted. In the lungs this means that thick, sticky mucus builds up, causing infection and progressive damage. People with CF generally cough, and sometimes may cough a lot. This is the body trying to clear the lungs of mucus. The cough is not infectious.

CF can also affect other parts of the body. Many people with CF need digestive enzyme supplements and a special diet due to damage to the pancreas.

People with CF have different personalities, abilities, hopes and beliefs. Whilst they have lived with this condition all their lives, it neither defines who they are nor what they do.

If you employ someone with CF and you have any questions, just ask them. You can also get more information by contacting our Helpline.

Living with CF looks different for everyone, and people with CF undertake a wide range of jobs. If you’ve employed someone with CF previously, please be aware that a new employee with CF could have very different symptoms and experiences. Ask your new employee what their experience is.

65% of adults with CF are either students or in paid employment

CF is often an invisible condition. People with CF don’t usually look ill unless they are very unwell, but it’s important to remember that a person with CF will still have a daily treatment regimen, some of which will be done before and after work. The health of a person with CF can also fluctuate so their treatment regimen may change, or they may need to go for appointments or hospital stays more often.

CF does not affect cognitive ability.

The best way to find out how to support your employee with CF is to talk to them about it, as early as possible. Make sure you regularly check that your support still meets their needs, as CF is a condition that can change over time. Here are some general ways in which you could support them:

• Support them to maintain their own health – although you don’t need any special medical training, and it’s extremely unlikely that CF could result in an emergency, your employee with CF will mostly need you to support them to care for themselves while fulfilling their potential at work.
• Work with them to manage workloads and stress – symptoms can become worse as a result of stress or tiredness, and could mean they need time off.
• Help them avoid getting lung infections while at work – some environments increase the risk of someone with CF getting a lung infection, such as stagnant water, damp or mouldy environments and hay or rotting vegetation. In an office, good cleaning and hygiene practices will stop these risks
• Talk to your employee about any reasonable adjustments they need you to make – these could include:
  • Flexibility around starting and finishing work to help them do their daily treatments
  • Flexibility or reduction in hours to ensure they can go to appointments. A routine clinic visit is usually needed every six to eight weeks
  • Home working if your employee with CF is unwell or having intravenous antibiotics, as this may help them get better quicker
  • Spreading their contracted hours across the week, month or year
  • Taking unpaid sick leave when they have appointments or hospital stays, or saving up their overtime or annual leave days for absences

• Don’t share that they have CF without their permission – people with CF will each have their own feelings on whether they want their colleagues to know about their condition
• Provide training – if your employee wishes, train other employees to help them understand the impact of CF. 

The Equality Act 2010 (or the Disability Discrimination Act 1995 if you are in Northern Ireland) lists the legal rights for people you employ who have a disability such as CF. You must not treat people with CF less favourably. If problems with your employee are related to their CF, then you must support them by making reasonable adjustments in the workplace.

It’s in everyone’s interest that every employee continues to work for you as long as possible. Focus on their achievements and successes, not their CF. If you are concerned about changes in performance, talk with your employee with CF about why this might have happened and what you can do to help. Ensure that any decisions made are made with your employee with CF.

Under The Health and Safety at Work Act 1974 you must look at the potential risks to your employees’ health, and you all must all work towards preventing them.

The Business Disability Forum brings business leaders, disabled people, and Government together to understand what needs to change to improve the opportunities for disabled people in employment. They can give you tools and advice to find solutions that benefit everyone.

The Department for Work and Pensions has a Disability Service, which your employee can access. They can apply for funding from the Access to Work scheme, which can provide financial assistance to make reasonable adjustments or pay for return- to-work training. Contact Jobcentre Plus for more details.

Disability Confident can help you give opportunities to people with disabilities, both during recruitment and throughout their career. You can sign up to be a Disability Confident employer.

You can seek medical advice from the company medical adviser, or your employee’s specialist CF consultant. Ask your employee if they’re ok with you contacting them.